# 138 - Road Trip Treasures and Tribulations

For so many years I enjoyed car trips. Getting in the car and heading toward a destination, whether it was to visit family or to go on a vacation, I always enjoyed the sights along the way that can only come from traveling on the road. However, my body being glued together, clipped together, plated together, three ribs removed and part of me patched back together with a tissue transplant has combined to make travel, in a vehicle, a torturous process.

My mind still has the same old excitement building with anticipation of taking a road trip, but I am now being mentally assaulted with anxiety as a road trip approaches because my body becomes a mass of pain and struggle as each vibration from the road moves through parts of me that are no longer "me."

I can see that my body can endure approximately two hours on the road, and then it is feeling the impact of the road trip, which is now a great hardship on my body.

This has been devastating to me because I have always loved driving and going places by highway. Even more upsetting, my daughters each live more than two hours one-way from my current home.

One consideration I've been making, lately, is that a truck is not the best form of transportation for my particular difficulties. Since my upper spine has been reconstructed, and is, essentially, in existence due to fused cadaver bone and double-sided hardware with screws and bolts, any road vibration or movement, especially in a truck, will naturally travel to the highest point and one little bump, in a truck, follows the natural course of motion which is not good for the neck area.

There goes my dream of wanting to buy a Land Cruiser! This is another area of shifting changes requiring adaptation to limitations. And yes, I despise the word "limitation." However, that word is simply a vocabulary description of what all of us must confront, in one way or another, sooner or later. Life always has limitations and boundaries that we must face.

A lower profile vehicle with a cushioned shock system is the combination I need to be able to travel, realistically. I had to laugh when thinking about this because I realize this is the reason many people with painful body-issues drive a Buick! Regardless, a truck, no matter how cushioned, is not going to work for my body during long distant travel that will be over two hours. For others, a truck will work, but for my cervical spine, it's a disaster. This fact is not a personal choice, it's a forced reality-check that I must confront.

That being said, I made the road trip from the Houston area to San Marcus as a passenger this week to witness my youngest daughter receiving her class ring at Texas State University. The drive was at least three hours, one-way, and this was a major challenge for my body to endure in a truck driven by my husband. But, I was thrilled to still be able to make it and to see such beautiful moments in life!

With my youngest daughter who now has her university ring!

My daughter, Stefie, was adorable as her 90-pound petite frame crossed in front of the stage area to get her ring and to dip it into the waterfall that held water from the San Marcus River that runs into the Guadelupe river. That is the tradition, to dip the ring in the river waters that play such a massive part of this university's history.

I loved it!

Her achievement is a beautiful time for me, as a mother. I have now witnessed both of my daughters getting their class rings for their university studies and this has been a huge blessing. I sit back and know that something went right for my two daughters to have had the drive, the ability, the support, and the commitment to earn their four-year degrees in such a strict amount of time.

We took our growing family out to dinner to celebrate our youngest getting her class ring, and it was wonderful that she got to be the reason for the celebration; it was her turn to shine. She earned this moment and a parent is always very proud to share such times in the life of their adult child.

Stefie and her Aunt Normandy, both
showing their Texas State rings! A family
tradition that's very special!

 

Timeless.

 

The following day, back on the road, I hoped to make it home without any major problems. About two hours into the trip, in a rush of prickling sensation, I completely lost feeling to both of my hands and then, as I stared at my hands and the weird numbness, it traveled up to my forearms. The numbness was a shocking experience because it did not happen gradually, it occurred with suddenness. I was sitting up, alert, moving around in my seat, listening to good music, my arms in frequent motion for this or that, so it didn't make sense. However, as the numbness rushed to my fingers and moved upward with haste, I begin to shift around, I leaned forward, stretched and did everything I could to get feeling back in my arms; however, the numbness kept increasing.

I shook my arms and squeezed my hands together while looking at them as if they were foreign attachments to my body. It was not a good feeling. Unlike impinged blood flow that can be returned with an adjustment of our limbs, this numbness remained for nearly 45 minutes. I could still move my hands and fingers, but they were in a state of being "asleep" in a flash and remained in this manner for an extended period of time. All I can think is that the spinal cord impingement that I still live with in my cervical spine had been jostled a bit too much, and I paid a price.

My spine issues go well beyond experiencing back pain, certain situations cause my spine to be under strain with the spinal cord still being impacted by direct impingement, so this affects the functioning of my body. It's not pleasant. And this, of course, creates issues with my Addison's disease. Many people with Addison's disease are dealing with additional problems that make managing the Addison's a difficult prospect. However, as a precaution, I did have my auto-blood pressure cuff in my purse to help me prevent an Addison's crash.

I can tell anyone with Addison's disease that a wrist blood pressure cuff is probably one of your best defense mechanisms to combat plummeting vitals that are often difficult to measure, until we are feeling the side-effects of fading vitals due to sudden blood pressure dips. Even with stress doses of HC taken while traveling, I still have trouble balancing my condition. It's a challenge.

I've heard many fellow Addisonians discuss travel by plane being just as difficult, if not more difficult, and often shocking, by the impact traveling by air has on their body. It appears that flying requires hydration to be a super-priority for those with Addison's. Also, a person's body endures more hardship with jet-lag negatively impacting an Addisonian on a level that most "normal" people cannot comprehend. I believe that having Addison's disease or Adrenal Insufficiency, especially if your condition is considered "brittle," can make any kind of travel a health challenge.

For me, I can't help but mourn my inability to travel by car without a second thought, as I had done for most of my life. Going on a car trip is now like signing up for voluntary torture for me, but it's amazing the level of torture we will endure to do things we love. Still, I opt to travel by road as infrequently as possible because I need to stay independent and the road trip can take a massive toll on my health.

I guess this is the reason I absolutely LOVE vacationing by cruise. Having the ability to retreat to your cabin and to be supine can be tremendously helpful for a person who has major health challenges, especially if you are not prone to getting seasick. Being able to enjoy such a vacation is empowering, but I can't orchestrate all family gatherings and special events to be held on a cruise-line. Such a shame!

Anyway, I have had an awesome time seeing my baby get her beautiful class ring and to honor her achievements. She's an amazing young gal and has much to offer society. She will make a wonderful Child Life Specialist.

My father-in-law with my Stefie!

And...I am going to work on test-driving vehicles that can better provide a cushioned, low-profile, shock-absorbing ride that is less likely to give me major wobble-head problems.

Then, New York, New York...HERE I COME! :-)

# 135 - Being Steamrolled

To be "steamrolled" is defined by the wide-web's Urban Dictionary as to be wiped out very quickly without any pause in the attack and to face rapid or continuous destruction.

Sometimes we can feel as if life is steamrolling us.

Life is full of challenges. I am going through several simultaneously. Isn't that the way it goes sometimes? Yes, I'm stuck in a place of feeling as if I am being steamrolled. Of course, it would be easier to deal with certain things if there were more time in between each event, but all of it is rather jam-packed into the same time-frame, and that's how it is going for me these days. I come up for air every chance I get.

Regardless, I will keep moving forward while knowing that dark days will soon give way to light. I'm an eternal optimist, so I know things will end up better than ever, as long as I hang in there.

One problem I've been encountering is serious nose bleeds. In the past 24 hours alone, I have been battling nose bleeds that make my surroundings look like a crime scene. I will be completely unsuspecting, perhaps reading a book, and all of a sudden I will feel a warm trickle going down my face. My nosebleeds are so serious that I have to cup my hands to catch the flowing blood and run to the sink. Usually, it stops as fast as it began. My nose is free of any sores or irritation, the blood is coming from higher...from somewhere that is obviously under pressure and needing release.

I was supposed to get an MRI of the brain this past summer, but I never went. Actually, the diagnostic imaging place was constantly back-logged and having trouble fitting me into the schedule, then I let life get in the way. Anyway, I think it's time to get it done.

Last night, as I laid in bed, sound asleep, I woke up with my throat full of blood and I reached my hand to my face, in the dark, and felt the warm wet sensation. Are you serious? Well, that my was first thought in frustration. In my sleep? This is ridiculous!

In a hurry, I turned on my nightlight to find my hand covered in blood. Fortunately, I had my tissue close by and was able to catch the blood as my head tilted forward off the pillow. I realized that this can't keep happening. Something is going on. Plus, the wobbly head sensation I've been having lately sure doesn't put me at ease. But, I have so many other things going on that it's hard to tackle each separate problem, which makes it overwhelming to decide which area to focus on first. Then, I remember to keep taking step after step, working to slowly diminish my list of problems with special attention to the most immediate issues.

I tried to think of what I have done differently to perhaps cause these nosebleeds --- all I can think of is that I've over-done it in the house this week to get it ready for showings, trying to get it sold. Today, I am forcing myself to stay in bed. If a vessel is under pressure, I'm giving it a break today.

On top of this most recent problem and is reoccuring and demanding my immediate attention, I have been forced to face the fact that I'm about to be admitted into the hospital, and if you are a regular reader, you KNOW how much I detest being in the hospital, for anything.

For the family members who do their part to stay in touch with me and who are interested in me as well as me being interested in them, they know that I have a hospital admission already planned for the first week of November. My doctor wanted to admit me next week, but I refused because my daughter is getting married in about two weeks. I don't want to take the chance on having something go wrong and me end up not being able to walk out of that hospital and be well enough to attend the wedding. I won't chance it. So, I asked him to push it back. Of course, he thinks I'm nuts, but it's not every day that your daughter is getting married. Also, I don't want to have anything done until she's returned from her honeymoon; if something were to go wrong, the last thing I would want is for my daughter to have her honeymoon tainted by a dreaded phone call.

If I have a choice in the matter, I will put myself on hold until after the wedding excitement and honeymoon is over. It might be the wrong choice, I realize that, but for me, it's the right choice for the time.

This wedding is more important to me than I can express. Even though I am struggling, I am determined to be present and without additional worries for this wedding. Afterward, I can be admitted to the hospital and hope everything goes well. Perhaps it will all go so well that I'll be able to breeze through everything and come right back home, but my doctor is taking extra precautions. If it doesn't go well, I won't have the added stress and pressure of feeling as if my situation is causing my kids heartache during a time of expected joy.

My sister knows of my hospital admission date and she will be by my side to make any decision necessary. My youngest daughter might be available as well and she'd be my first choice for necessary decisions regarding my health, if I happen to be knocked out and needing representation. My doctor has made it clear that I need to make sure that arrangements are made for a person to be able to act on my behalf, so I am ready. I'm doing my part. However, my youngest daughter is going through her own problems and so my sister is ready to step in and be the one to help, if needed.

For now, I am concerned that my nosebleeds might interfere with the anesthesia that I will be receiving while in the hospital. Even if I am knocked out, just like last night, a nosebleed might start and I am concerned that no one would know about it until I am in distress, especially because of the amount of blood that is involved. All I can do is make them hyper-aware of this potential problem and hope they stay alert enough to handle it, if it should happen at the most inopportune moment.

As for my hospitalization and upcoming procedures, this is following an amazing Baylor doctor taking my previous CTScans from this past June, scans of my abdomen, and he ordered a second-opinion radiology report. I'm glad he did because it cleared up some wrong assumptions by the first radiologist, but also revealed some definite issues that need to be explored further. Last week, this doctor called me directly. I can tell you that when a doctor is picking up the phone to call you on their own to discuss your radiology report and upcoming procedures and telling you that he hand-picked your surgeon, you know you better listen closely.

I got the call last week as I was heading to mediation for a lawsuit involving our house that had been destroyed by Hurricane Ike in 2008. Turns out, we had hired schemers who we were led to believe were Public Adjusters, so now I am dealing with that on top of everything else, plus a marriage that is disintegrating with threats to take away the things that mean the most to me. First, there are threats of doing what he can to prevent me from attending my daughter's wedding and next are threats to do his best to keep me from getting our acreage as part of the divorce, even though he doesn't want it, he wants to take steps to keep me from having it as well.

Then, to know that my youngest daughter is dealing with her own health issues and I cannot even make the trip to be with her during this time is pure agony.

Things seem to be pouring down, but I keep my faith and know that all of this external chaos cannot touch the peaceful joy within me that is still breathing and looking forward to better days.

I've been around the block enough times to know that better days are usually ahead, so it's good to never give up. Never!

It is regretful that so much is happening at once, but there is great joy mixed in the middle of it all...my daughter getting married is something that I have to cling to as other areas are a struggle. Getting to see her be married is one of my greatest delights, even though there is someone who would love to yank that possibility away from me. I've never had that kind of hateful thinking, so it's hard for me to understand. However, I will not let their sinister intentions interfere with my capacity to still experience joy in the middle of heartache.

I've already been able to make it past massive hurdles, so these in front of me are of little consequence to what I've already faced and conquered. In fact, a few of these hurdles in front of me now will soon be behind me and never able to present itself as a problem again.

Even though I am not looking forward to a hospital admission and am feeling a bit nervous about all that I will be facing, I am glad to be given the chance to get the worries of any potential problems behind me...the doctors will handle anything they see and I am hoping their expertise will only contribute to my increasing good health.

As for today, I better get back on top of that MRI of the brain that I was supposed to have so long ago. The nosebleeds are here with a vengeance and I don't want to go through more days of having to rush around trying to handle an internal busted pipe that is creating a mess. I hope it is simply a vessel irritated and that the irritation is not a chain reaction of something else --- I always opt for the most simple explanation!

For those of you out there who are facing your own hurdles that seem to be piling up on you, remember that you can get past all of them by facing them straight on and just doing what you can, day by day, to make a dent into the situation. It might be too overwhelming to deal with it all at one time or it might not be possible, but set your eyes beyond the hurdle, to the time when it will eventually be a part of your past. New hurdles will always come and that's why it is good to handle them as soon as you can, to prevent the pile-up. If I had done the brain MRI when it was ordered, I would have one less pile on my plate to scrape clean. As it is, I will do my best to do some catching up and to even get ahead of the game so I can be more prepared to enjoy each good day to the fullest.

And for good news, as I close out this post that is taking me FOREVER to write...I just got a confirmation that my brain MRI is scheduled early tomorrow morning, so that part will soon be finished and might help to find the source of these serious nosebleeds that catch me completely off guard. I'm taking my steps, bit by bit, to pass more hurdles!

I am wishing all of you the blessing of contentment with spurts of joy that will be so strong as to overshadow all else. To me, that is the best that life can give us.

This past Sunday, on my way to a memorial for
an old friend. Treasure life while you can!

# 128 - Sharing the Soul

As a mom, I've diligently kept all of my daughters' art work from their childhood. Years ago, I made extra large-art portfolio holders by stapling two posterboards together, leaving the top open to slide in their artwork. This kept their work from being bent and creased.

In an easily accessible area, the portfolio was kept behind my china cabinet with the edge of the portfolio barely sticking out to make it easy to retrieve for adding new artwork to it.

Recently, I took a day to spread out some of their work and to simply gaze upon the beauty of each piece. I'm considering buying very large frames so that I can create a collage of framed artwork for each daughter; I plan to put these collages in the guest bedroom for everyone to enjoy.

I imagine, one day, when my children have children of their own, my visiting grandbabies will get a kick out of seeing their mommy's art, created when their mommy was a child. It will be a link from childhood to childhood.

Some of their work is abstract, other work is "still-art" and a few pieces reflect a historical event. Each one is precious to me.

 

 

Most moms love to get their child's artwork, but I can't express how excited I had been to get each drawing, each painting, each sculpture...I never wanted to buy any art because I had little artists living in my household.

To add to the art of my children, I have my own artwork throughout the house that I've produced for years and years, especially some larger pieces that came with studying Visual Arts and Design at the University of Houston. I've been blessed to work in the Arbor Building through many art classes and to have professors of great artistic standing be my teachers in specific art methods.

Obeying my own need to create art is a tremendous stress reducer for me. However, I had some serious health battles that would put a wall between me and my need to create art, especially the battle with being able to use my arms since they were not getting adequate blood flow. But, I had two major surgeries to better enable blood to get to my arms and hands, a two year process of surgical intervention that went into three-four years after they decided to remove my minor pectoral muscle on the right side since it was shredded by bone shards. Even if the major surgeries were horrific and came with critical complications, I'm happy that my left side works wonderfully, but my right side was never properly "decompressed" by the removal of my first rib along with the removal of the anterior and scalene muscles in my neck --- I also have artery clips along the thoracic arteries as well, both sides.

The surgeries had to be done a year apart. Each one required approximately one year recovery, mostly because of the collapse lung that each surgery left me to deal with --- because of a paralyzed diaphragm. The nerve in your body that is the "control wire" for the diaphragm, which controls the lung, well, this "control wire" was impacted by each surgery, so each side ended up with a collapsed lung following surgery. It would take about 9 months, each time, for me to again be able to inflate my lung. Let me tell you, everything done to me in the dice and chop operating room could not compare to the lung collapsing. It's not a good feeling when your lung collapses and you can feel the lung sticking to itself --- to inflate it, with each labored breath or with pulmonary rehabilitation causes tremendous agony.

My left side was surgically decompressed by this method in 2005 and the right side was done a year later, in 2006. Since I am still unable to freely use my right arm, it's an ongoing battle. Even the simple act of blogging can cause me trouble as the right arm goes numb and pain from the lack of bloodflow creates pain down the arm and a sensation of choking on the right side of my neck. It's a big price to pay, but I try to position myself the best way possible so that I can type, type, type. I can use my arm for a short time, but it's never felt the same since the days when I could use my arms without a second thought and that was ten years ago.

I guess this is another reason I've treasured my daughters' artwork. If anyone understands the desire to create art, to play instruments and to do things that are ordinary daily activities without a thought about anything other than "Which color to use next," or "Which key to play next?" -- I do understand having the burning desire to do such things, yet not be able to do them because of physical limitations. I also understand what it means to push past the pain, to keep going in spite of challenges. Sometimes I've paid heavily for those decisions, but I rarely regret it.

Good thing I have partial use of my right arm since the surgery, it is better than before surgery, but still not completely workable as is my left side. I can often work around my incomplete decompression. Maybe one day I'll have the luxury to have the right side fully decompressed so that I can do normal things again, like drive to see my daughter in Dallas without it being a huge undertaking that causes me major issues, such as being able to feel my arm. Driving requires limited mobility, a huge issue for me.

Yes, maybe you can see a little through my eyes as well that this artwork is more meaningful than I can express.

Living life as fully as you can means different things for different people. Some people are given every tool and every healthy benefit to be able to live a beautiful life, yet they still take it forgranted. My mindset feels that there are enough problems, day by day, for me to conquer; I certainly don't need to add any more problems to what I already face. For many, like me, just getting through their day is a personal battlefield that brings constant reminders that simple things can be great challenges.

Others seem to look for problems because it appears they need more drama in their life or they are not satisfied with having an "ordinary" life full of blessings that deserve focus instead of contrived issues stemming from owning an ungrateful heart. I've seen so many people create their own problems and these same people proceed to wonder why their life is full of problems?

Personally, if I have extra energy and physical capabilities, it must go toward the constant effort to keep my health balanced so that I may have that awesome day with a few minutes at the piano or to do simple basic tasks, such as the laundry and dusting the furniture. One thing I must say is that a good day for me can indeed be jam-packed; I've learned to fully take advantage of a good day, probably much better than a "regular" person without any health hurdles.

However, once my neck broke, in 2009, it required massive reconstruction and double-sided hardware to support the neck so it would not collapse again. To add to the thoracic artery issues, I found myself confronting more challenges on top of existing challenges. It felt like I was being sandwiched between major health assaults that I had no control over and I did feel squashed like a bug. For a while, I didn't feel very excited about the added loss of sensation in my hands due to a spinal cord injury. I didn't like the struggle to move my feet forward and to lift them to take a step...all of it took more effort than could be expressed, even to those closest around me.

The spinal cord was squished between two bones that had broken, so it damaged the spinal cord in a manner that could not be repaired. It created a large lesion on the C2 section of spinal cord that is still present and visible on MRI scans. Still, I regained more feeling and better use of my arms/hands and legs/feet than the doctors thought were possible. I've been given more than my fair share of miracles, even if I've been given more than my fair share of physical hurdles.

Through it all, I've learned there is something powerful about art --- it is a healing expression of humanity. I finally understood that for many people, especially for those who have suffered deeply from physical or emotional pain, a piece of art can seem to speak to you or for you. Art can capture a feeling, it can represent the best in you, the worst in you or it can bring hope beyond words.

For some dedicated artists, on any level, from novice to accomplished, there seems to be a sharing of the soul in some of the work produced by particular artists. Often, you can feel pulled into a piece of art. If you haven't had this experience yet, then I recommend that you view art differently. Try to search for a piece of art that truly SPEAKS to you with such depth that you feel knocked out of your shoes. It's out there, you might have just not found it yet, but when you do...you'll know it.

I have a few personal favorites that definitely evoke great emotion from within the well of my soul.

In fact, I'll be scanning a few pictures of historical art that have brought me great comfort and hope during times of great turmoil.

But, there is a certain peace, joy and innocence that comes with looking at a child's artwork. It's like looking out a window to see a different view of sunshine.

How many times have I been delighted by these works of art created by my children? I can't count. Even through difficult times of their own...my children created with bright goodness, always doing their best to get their mind's eye down on paper.

I love the effort. I love the result. I love the sharing of their souls.

# 127 - Focusing on Priorities

To follow up from the CTScan showing issues, I have an appointment with a "renowned" gastroenterologist in Houston's Medical Center that is with the Baylor Medical Clinic. The only problem is that it takes so long to get into one of his available slots, but I'm set for August 10th. Since I'm in constant pain in the entire abdominal wall, this will be an excruciating wait.

But, I can do it.

As usual, the biggest problem with an issue like this is to manage my Addison's. I am having a very difficult time getting out of the state of exhaustion; I just feel like I'm dragging badly.

To combat this, my doctor has increased my daily hydrocortisone intake another 10mg in the morning and an additional 5-10 every afternoon. Then, if I feel if I am still sputtering, I take control and administer more HC until I am feeling more stable.

I could have seen another doctor in my area sooner, but I've learned to not mess around with doctors who are mass producers and to stick with doctors who are better known for being in their line of work because they actually are diagnostically talented. And, I've learned to choose doctors who are connected to the hospitals I know practice higher standards of care and who have more capabilities at their facilities.

After you've done your part, the rest is in God's hands. All I know is that I have to be pro-active in getting myself into as healthy as a state as possible because the next big event coming in our lives around here is my oldest daughter's wedding in October. That's only a hop, skip and a jump away!

For now, until that appointment on August 10th, I have lots of things to do --- or to TRY to do! We are getting the house back in order since Stefie moved out to an apartment next to her campus.

Me & Stefie saying goodbye as she
leaves for college this year.

Things have been rearranged because of all the furniture we gave to her, in an effort to scale back our own belongings and to help her start her own life a bit easier, so now we can make things look even less cramped in this big house of ours. Hopefully, next week, the For Sale sign will go back into the yard and we'll get this big baby unloaded!

Another item on my agenda is my daughter's wedding shower here in the Houston area. That will be on August 4th and since I'm a typical mom co-hosting her daughter's shower, I have LOTS to do still. I hand-made all of her wedding shower invitations and this week I will be starting on the Alice in Wonderland themed decorations. It's been a lot of fun to cut, glue, glitter and print....makes me feel like I'm doing art projects for a really good cause! This is definitely a time when Pinterest is a source of beautiful ideas, even though I'm still lagging behind in how to exactly use this great site. I'm learning.

Heather & Henry

Heather's wedding is fast approaching and I'm so excited that I cannot express it in words how I feel! As far as Addison's Disease goes...I will DEFINITELY have to prepare myself to take stress dosages prior to traveling for the wedding and continue taking higher maintenance dosages to keep up with the physical strain and emotional strain that will be taking place in my body. There's just no way that this wedding won't have a huge impact on me...she's my baby! Even so, Heather has diligently taken great care to handle every element of her wedding and I'll be so happy to be with her the week of her wedding, to help pull it all together.

Heather & Henry - Engagement Day

I am so happy to be there for her...she's eager for me to help her with organizing for the wedding and for the honeymoon preparations since they will be traveling to Europe, and you can bet that I'll be cleaning house for her on a "mommy level" so that her and Henry can come back to a house that's without any worries. Her dad will be great as well, he'll help with ceiling fans and other things that I can't reach without a step ladder and I'm sure he'll be doing lots of cooking.

Together, we'll do our best to keep the two kiddos on track and to help remove stress from the days leading up to the wedding. I want them to relax and to focus on the sacred part of being married...kind of a quiet reverence for the huge step before God that they are about to take. We'll definitely be pulling the best part of ourselves together so that we can pray for these kids as they begin their marriage...for a mom and dad to work together to pull blessings over their children, I believe that says a lot and is critical for a young couple to get the boost to their marriage that is memorable and precious.

No matter what is going on within family dynamics, the important issue right now is that these two young adults be given every bit of support that can be reasonably given to them as they begin their marriage.

The good thing is, in the face of hard times, good times, I-don't-think-I-can-stand-it times, and the most connected times...both of these kids come from parents who have made it together, in spite of problems. Marriage is something that can't be discarded without major consequences and that is something you want to pass on to your children. Marriage is something that takes a long time to build, but can be demolished fast by doing unloving things and saying unloving words...as long as they put the goal of being kind to one another as a priority, they'll find more joy together. I hope they get this concept down into their bones as they start their marriage. As long as they care about the feelings of their partner, there is a good marriage to be had.

It's a serious thing to have a wedding...it's not an event to be treated like a party because it is so far above any "party" that can be imagined. Yes, it should be a celebration, a reverent celebration in the joining of two people as one in marriage while witnesses watch the moment the couple goes from single identities to two joined as one. A wedding day is a pivotal day to be marked in their history as a day that can never be erased. It's a day when a single person with an singular identity becomes melded by vows to another person in a manner that should last a life-time.

If anyone can do it, these two kiddos can. In my book, they've proved their love and determination to be together and to build a life together. Oh, there will be rough times ahead, but there will also be beautiful moments that will make it ALL worthwhile.

Yes, marriage is to be respected and to be honored from the moment the "I do" is said until the moment no more words can be said.

October 13, 2012 will be the day these two will be joined in Holy Matrimony. I will be honored, touched and overjoyed to help them get to the altar!

# 116 - More Glandular Failure

As a woman with Addison's disease, one of the heightened areas of concern has been for my doctors to keep an eye on other glands in my body, watching for multi-glandular failure.

Interestingly, I have participated in several studies and for various academic papers and one question recently posed was for me to share advice I'd give to a newly diagnosed Addison's patient. First of all, whenever I say "Addison's," please know that the term, for me, includes all persons with adrenal insufficiency.

The answer to that question is wide and varied. However, after dealing with Addison's disease that was officially diagnosed by a huge medical team, while hospitalized during a crisis in 2001, I've dealt with many lessons this odd disease will bring into your life.

Lately though, I've discovered that this disease has caused me to go into complete Ovarian failure. It must have begun last year, at 42 years of age. To be quite descriptive, I have been without a period for over nine months, but the last few that I did have were quite different from the endometriosis nightmare monthlies I'd suffered with during my "good" ovary days.

My last gynecologist had told me, about two years ago, that he believed I was going into ovarian failure. He stated that I was too young to be in menopause and my estrogen levels, etc., showed I was not pre-menopausal, but Addison's disease has a different plan for these glands. We must remember that ovaries are glands. Apparently, my body has decided to do away with these as well.

This past week, my new gyn was fairly nervous about broaching this subject, until I assured him that I've been through the medical ringer and he did not need to treat me with kid-gloves. Unlike other women I know with Addison's who are very young, in their 20's, and experiencing devastation at their ovarian failure, I am 43 and have had the blessing to give birth to two daughters when I was very young.

As my gyn put it, "The eggs are forever gone, no more left to do business with in the uterus."

For me, I'd already mourned the loss of my childbearing years in the last five years. I guess most women do this at the realization that those beautiful days are gone. Those beautiful, frantic, exhausting, rewarding, frustrating days are in the past. My days with raising kids has been fulfilled.

Yes, to be honest, I loved making children with my husband! I can't imagine any other parents being as joyful as we had been to produce offspring. We were giddy in love and crazy about our babies before they were even born. My husband would put his face against my belly every evening and talk to the baby...he wanted to make SURE they recognized his voice upon their birth. He never failed to make sure he told the forming babe that he loved them and couldn't wait to meet them in person.

Myself, I'd read books to my growing abdomen and dreamed of the day I'd read those same books with the child in my arms. It happened. My dreams came true.

So, I've been blessed. To be told at 43 years of age that my ovaries are kaput is not anything but more dreary news about my body sputtering with problems due to health issues. My dentist friend joked with me this past week about it (we've known each other for 20 years), he said, "Better it be a gland to fail than an organ."

Yes, that is true. And better it be a gland or two that I've already put to work so beautifully. I must say, my ovaries and my genes combined with my husband's did produce two remarkable beauties. So, I feel blessed in spite of being told that a hysterectomy might be in order.

The next step to follow all the urine samplings and extensive tubes of blood for every test imaginable to a gyn...I am scheduled for a mammogram, as a precaution since my mother died at 57 from breast cancer, and to get the "magic wand" ultrasound. For those of you who don't know what that is, well, it's an internal ultrasound for women...use the imagination...a wand that is inserted to get an up close view of the uterus, firsthand.

The first time I showed up for one of these ultrasounds, I thought I was to have a normal, abdominal ultrasound and was literally horrified by the contraption that the technician pulled out and waved about as if it were a sword. I felt tricked. I felt as if I were about to experience a technological violation! However, she quickly discovered by my fallen open jaw and shocked expression that I had never even imagined such a test existed. She stopped everything and explained the ultrasound thoroughly before going further.

Obviously, I have lived under a lot of "protection" from these kinds of things. To each their own. For me, it was disturbing.

Now, I must have another tryst with the magic wand so that we can see what is happening with the uterus and the fibroids that have long been present, yet stable. I'm not relishing the idea of another surgery. I'd been hoping to get by without ever needing another since I've had a minimum of seven surgeries already, each a major surgery. We all know that Addison's disease brings great risks with surgery. The doctor already mentioned the risks several times during our appointment, but he already thinks it is probably necessary.

I wondered, if the ovaries are failing, is it necessary to remove them because they might do further harm by remaining inside the body? I know nothing about any of this stuff. If anyone knows, I'd love to get your experienced or friend-shared knowledge.

For now, I sit here with my withering ovaries and wonder what else is withering? Pretty soon, I'll be completely vacant inside! So much will be removed from my body that I'll be hollowed out. Well, it seems like it.

I guess I had always wanted to be the Bionic Woman when I was a young girl. I'm half-way there. I have all of the loss and removals, but none of the military bionic parts that would make me super-human. I guess I should be fair and mention the titaniam parts I have throughout my body. Oh well, I guess I will be content to be myself, even if that means there is less of me to end with than had been with me to start.

Life is like that sometimes.

For those women who are newly diagnosed, I'd give advice to you to see a specialized OB-GYN right away, if you feel like going and expect to have children. Do not delay. I've personally known too many women with Addison's who have experienced ovarian failure because of this disease. For some, it happens sooner than for others. If it is possible, you could have your eggs harvested and stored for future decisions about children, at least the stored eggs would allow a decision to be made with less stress pressing down upon you. With the ovaries failing, you often still have the uterus and the ability to carry a child. So, think it over and spread the word.

When I was first diagnosed, I was told that ovarian failure was a possibility, but no one discussed the options. No one pressed upon me the decisions that I could make to enable us to have more children down the line. Since I was only 33 years of age at the time of diagnosis, this might have been imperative to us, had we wanted more children. To be fair, I had been critically ill for an extended period of time and it would probably have been impossible for me to carry a child to term. I still do not feel that any physician ever took the time to fully explain the ramifications of this disease upon other glands, bones, etc., because none of them really seemed to understand it themselves. The hint of information passed along seemed to come from what little textbook notes were available at the time...not much and often outdated with faded information that no longer proved valuable.

So, we must pass this critical information along on our own, by personal experience with having this disease, especially to the younger women who are finding themselves officially diagnosed with this condition. They need to be able to make every decision possible for themselves concerning their body's potential for more problems down the road. Explanations in the most simple form is best --- straight to the matter and without holding back. Treating the issue lightly will not make the problem less daunting. It would be best to lay potential problems on the table and let the woman with Addison's make her own decisions that will impact the remainder of her life. To NOT be told is the worst scenario. Knowledge can cause anguish, but knowledge definitely holds power.

These days, I am delighted to have grown daughters who will probably discover what it means to have their own children and their own set of challenges in this regard, pretty soon. The thought delights me in more ways than one. I am also delighted with my little niece Shaye because she is more like a grandchild to me than a niece. Since my mother passed away, I dote upon her as if she were a grand-daughter. My sister has been exceedingly beautiful in character by making sure that her daughter and me are well connected. Such a good heart is exposed by this depth of sharing.

Of course, my sister knows I'm up for babysitting whenever she and her husband want a date night, but if I happen to be busy doing something else, she doesn't seek to persecute me for having a life of my own either...so generous of her! Most of all, my sister is wise enough to know that her daughter will benefit from having other family members, older family members, in her circle of love. Denying a child that benefit is a form of cruelty and ugly selfishness. My children were always exposed to the elders in the family, on both my side and my husband's side. This is how they learn that being older doesn't mean you aren't fun and this helped them to respect the elderly for their position in life.

This past week, me and my niece, Shaye.
March 2012

Speaking of ovaries, it had been thought that my sister would never be able to have children of her own, so her ability to give birth to her child, Shaye, has been a massive blessing. Shaye is her one and only biological child, yet she is blessed to also have a step-son. My sister is a wonderful mother and one of my best-friends. We work hard to enrich each other's life and never to do anything to destruct it. That is the most wonderful kind of love anyone can experience.

Anyway, I wanted to pass on the latest in the Addison's disease saga, yet not leave you with worry or sadness. My life is full and rich. The Lord blessed me young. My young daughters still have a great deal of growing up to do, but my position these days is to kind of stand back and let them do the rest of it pretty much on their own. My "mothering" is not really needed any longer. My ovaries retired long ago in the truest sense and the cords have been cut. If my daughters ever need motherly advice, I'm here. If I'm not able to answer the phone the first time around, it surely doesn't mean I'm not here, it just means I couldn't get to the phone that time! My ovaries may be out of commission, but the best part of my mothering is still here...ME!

Bottom line is...they have a mom who is available. Since I no longer have a mom to answer the phone on the other line, I understand fully what the absence of a mother truly means. If my girls need a friend, I'm also here, but at times it might be good for their actual "friends" to fulfill this role. That said, I am thrilled that my youngest daughter and I hit that mutual respect of friendship very quickly...I respect what she tells me and she is respectful and a true friend with what I tell her. I can tell that she is a mature little thing, at only 21 years of age, unlike so many other young people her age that spew anything they know during a fit because it seems to suit their mood in ugliness. It's sad that it's so difficult for young people to find a true friend; too many are so self-involved that they are incapable of being a loyal friend to anyone, yet they expect everyone else to be loyal to them. One day, maybe they'll learn that friendship is a two-way street. I'm thankful Stefie is a wise friend at such a young age. I'm thankful that my sister is such a meaningful best-friend, then I have so many others as well who are dear friends. I am not lacking. But, it is certainly a wonder to behold as you realize that you gave birth to one of your best-friends! Yes, my ovaries have been good to me.

I cannot hold back my great happiness with my youngest child and there is no reason why I shouldn't make it known to everyone...she is a treasure in my life because she makes missing my mother less painful...my friendship with her is highly valued. I'd literally trust Stefie with making decisions about my life. If only all mothers could feel that way about their children. Again, I am blessed!

I'm sure my niece will be a great friend to her own mother, once she is in her
20's and I hope to also include her in my tight circle of true friends one day.
For now, she gets full attention as the five year old who has unending questions,
and I am glad to provide unending answers to keep her on her toes!

Speaking of deep friendships, I had discussed these woman-issues with my daughter Stefie over the past few months. It's odd, yet she had already suggested to me that I was in ovarian failure before the doctor confirmed it. She's very involved in her own life with working to finish her degree and has her own issues to confront, yet she still cares about her mom enough to delve a little into the issue and pay attention to the "Addison's disease" complications. So, the diagnosis was not a surprise to her, yet she's always saddened to discover a new way that this disease is trying to take me down.

Talking with her comforts me. I'll always remember her for being here for me during these past few months of great upheaval during my disability filing, during the administrative hearing sadness and through ongoing compounded medical issues in addition to other areas of big change in our lives. She knows better than anyone how I am impacted. Her compassion and selflessness is a salve for the soul. Is it no wonder that I am eager to return her friendship?

Ovaries, you failed me with perfect timing. I cannot complain. Addison's disease could not rob me this time around for I am already blessed indeed!

# 112 - On the Road-Trip of Life

While raising our daughters, we had many weekends away and so many memorable road-trips. Now that our daughters are grown women, the likelihood of getting to take a road-trip with our girls is slim.

Everyone is busy with their own lives, doing their own thing, handling their own responsibilities and taking care of their own business.

This is how it is supposed to be in life. You teach your children to do better than you did and to go further in life than you did. Always encourage them to be the generation that takes everything up a notch. My family strongly teaches that each generation should rise above the last...each should do their part to keep elevating the family into a better way of life and help pave the way for the ones to come next.

So, Deputy Dave and I worked hard to give our daughters an edge. These days, we are slowing our pace of life down a few notches. In fact, on our road trips, we literally slow down for the sights and enjoy the scenes that are passing by.

We especially love getting to see tractors. A few months ago, as we were driving along, it appears we've stumbled across a tractor parade or something, there are tractors everywhere and I love it!

This winter, we got to take a little road-trip with our daughters to Dallas. The guys sit up front and us three gals sit in the back while trying to eat our breakfast. It's not an easy feat for some of us, mainly me because I'm naturally clumsy.

As a precaution, Stefie tucks in her famous shirt-bib. Heck, it works, so don't knock it. 

I look at these gals and feel a surge of blessings pouring down upon me in a magical trickle. I am one blessed woman. Having daughters has been a dream-come-true for me. My girls are awesome.

I love that we are at the stage to where they do their own thing and if I have a bad-off day with Addison's, they are off and about, not hovering over me or lagging behind in a worried state of distraction. By now, they've also learned that I seem to bounce back and the best thing is to just leave me alone in my weakened times because it will likely pass. I just have to get through it.

Seeing my daughters live out their lives is the greatest gift they could give to me.

I hope my daughters never have to worry about any kind of chronic disease. Just about every family has something lurking somewhere...cervical cancer, eye problems, kidney problems, gastro issues, some families have mentally imbalanced issues to consider...everyone has something to be concerned about. And as a doctor once told me, "Anyone who thinks they have nothing to worry about heathwise should probably NOT go through too much testing and scanning because it's likely that something, even small, will turn up and ruin their image of themselves."

The doctor told me that so many people are out there looking healthy and not knowing the true state of their health. I guess this is how he tries to make me feel better about my health battles, at least I do know what I'm confronting and my regular testing doesn't leave much room for anything to be sneaky.

I've made my peace with embracing a body that has malfunctions. I learned first-hand that everything can be perfect and a short time later, nothing may be okay.

My Addison's disease might cause me some difficulties, but I am still thankful because there are so many people out there suffering with other things that cannot be helped with medication. At least I have a chance!

And the more that time passes and the more research that is completed, then the less these girls will have to worry about. Medical advances are making leaps and bounds every year. My daughters are healthy; yes, I am blessed indeed.

Times together, just us with our girls, those kind of times are just about gone. Now we've got fiances and boyfriends as part of our clan. Still, we all pile into the truck and take road-trips. Sometimes we just ride around town and look at houses we like. I'd say we're all compatible and enjoy each other's company.

Confronting your situation while living the best you can with it is all anyone can ask you to do. I try to focus on all that I can do instead of what I can't do. I try to allow myself more time to complete the chores that used to be mindless activities for me. I continue to adapt and to do all I can to make life as fulfilling and nice as possible.

The good thing is...Deputy Dave and I have entered this time in our lives where we are making big changes. Speaking of "big" we're getting rid of the house that's too big. Mostly, it is too difficult for me to maintain because of it being a two-story. Stairs aren't too much of an issue, as long as I don't have to climb them multiple times per day.

Change is good, family is wonderful, growth is beautiful and love is the sweetness that should be piled on top of it all.

I thank God for his constant hand in my life, His helping hand and guiding hand and nudging hand...I can't imagine not having it with me. I need it through this life-road-trip, all the way until the very end of my road. Yes, I do.

# 109 - Longing for the Little Things

After I became very ill with Addison's Disease over a decade ago, I had deteriorated so seriously into decline that I found myself bed-ridden most of the time.

At a formerly robust, energetic, and non-stop 33 years of age, I felt despair at being trapped and with a loss of independence. I had gone from being fiercely active as abundant energy flowed through me, to being halted in my tracks...well...I could barely even make tracks any longer because I could not stand for long, at least not on my own. But, the truth was, I felt as if I had a need for independence that could not be negotiated. Doesn't everybody feel that way?

I certainly felt unstoppable, until I got stopped in my tracks, by Addison's disease.

There is a song by Tim McGraw, "Live Like You Were Dying" and the lyrics give the story of a man in his 40's after he's received bad medical news. He decides to live it up, so he went sky-diving, he went rocky mountain climbing, and he went two point seven seconds on a bull name Fumanchu.

I love this song. It sums up the burning urge you develop within yourself after medical professionals tell you that they are not so sure that you will make it. Your brain must suddenly learn to operate without the body as a partner; when the physical body fails you, you find that your brain begins to work over-time. Normally, the body would partly keep you busy...our auto-pilot for physical motions can be fascinating. But, as you are forced to lie in a hospital bed and are without your normal busy life to keep you distracted, your mind begins to expand as it never has been given the chance to do previously.

Being STILL, especially forcibly, for extended periods of time, can definitely CHANGE YOUR LIFE FOREVER.

I realize that some people become seriously ill, yet they still have the choice to do normal things for a while because their body is still cooperating. Hence the song by Tim McGraw with his main character still being able to ride a bull named Fumanchu. However, for me and for many others, an illness or sudden injury can mean that everything in your life has turned upside down and the option to sit on that bull on your own accord has passed by.

For me, I hear this song and I love it, but I think, MY GOODNESS, during my health downfall, I didn't have the choice to go skydiving, especially not with living precariously with Addison's Disease. For me and for others, finding yourself with a serious medical condition or tragic injury might not only mean that you couldn't go rocky mountain climbing, it means that the very simplistic things are unattainable. Forget the dramatic "I'm-Really-Living-Now" kind of moments, how about being so far gone that you are lying there longing to do the little things in life, the little things that had defined your very existence.

Just like the "Bucket List" demonstrates a person's deep-seated desire to "conquer the world" in their last days, a person can also have a "Bucket List" that is full of the desire to do very ordinary, common, little things. Once the ability to do those things is taken away from you, those sky-diving, rocky mountain climbing and riding the bull moments mean NOTHING because all you long to do is to be able to get to the bathroom and back by yourself or to read a book to your child or to go to the grocery store by yourself and push the cart without a thought or care as to the physical cooperation of your body.

Oh yes my friends, for some, that "Bucket List" and those moments where you "Live Like You Were Dying" might be rather humble moments that you long to have back.

During a few serious health battles, as I've had more than my fair share of being stuck in bed or in a recliner, the boring little things that I'd taken forgranted were suddenly being done by someone else, and it dug into the core of my soul that I could not do my simple "mommy" chores.

I wanted to keep being the pro-active mommy I'd always been. I purposefully had my children very young because I wanted to be THAT mom who could keep up with everything the kids did while they were being raised.

Around 1990 - I am holding Stefanie.

And I had been THAT mommy who was strong and on top of the world. Our family lived a life full of biking, hiking, camping, traveling, exploring and being outdoors. We lived with me being the one who drove my kids back and forth to school every day because I dreaded the thought of them riding the bus (but my kids would sometimes BEG to have a "bus" day to be with their friends and it was okay). The Mommy-Ride was always first choice in our house. Those trips back and forth to school every day was literally what I called "Sacred Time" with my children.

I owned a successful business that brought in major money, yet allowed me to attend every school function held during school hours. I didn't miss a beat with my kids. I sacrificed and orchestrated my world around my children. I took my mommy-business very serious, and I certainly didn't want someone filling in for me in this very treasured life position. But, I had no choice because my body was so sick that I had no choice but to linger in bed until my body "recovered."

Stronger again, volunteering at a car wash for the team.
I basically was a contributing photographer for the
team for end-of-year publishing.

During much of this time, I was miserable, sad and mourning the loss of being able to do these seemingly insignificant things for my daughters and for my husband. My faith in God got me through those very "alone" moments, even when people were around me, I was clearly "alone" because my condition separated me from everyone. For so long, I was sad that all of them could walk out of the room and away from the devastation while I remained stuck with it, as time ticked by, I could not escape my newfound jello body.

Even better days were to come after several huge hurdles,
such as this day at a Texas A&M game as I get
to play with her hair again!

At first, we didn't know I would recover, in and out of the hospital I would go, but I began to slowly regain strength and abilities to allow me to do the sweetest, most precious things for my daughters and husband. However, a mommy is a caregiver of the most treasured things she'll ever have...her children. Regaining enough health and strength to resume some of these mommy-things had been my Live-Like-You-Were-Dying moments to savor. I didn't need a trophy, an award, or accolades; I didn't need to run a marathon or lift weights: I didn't need to jump out of an airplane...I just needed to sweep the floor and re-organize their toys and pick them up from school.

As soon as possible, often while pushing myself too far and too fast, I began to again do the things that an ordinary mommy or parent does for their child, especially after she is held back from doing them for too long. And if I hadn't LOVED doing those mundane, daily things during the years BEFORE life dictated a different way of living for me, I sure learned to LOVE them afterward.

My oldest, Heather, with me at a football game to watch
her younger sister (Stefie) perform awesome, sporting dance
moves at half-time.

In a way, I feel strangely blessed and privileged to have learned this lesson while very young. Yes, that is a blessing indeed, to learn to appreciate all that you have on a higher level, that is an amazing gift.

This is a photo of the time-frame when I was beginning
to fall ill due to Addison's disease. My oldest and very tall gal is actually
only about 13 years and my youngest is around 10 years old.

So, I am going to take the liberty to rewrite the beginning and with the opening chorus of this song, according to my own experience that maybe some of you may relate to during a huge change in life due to illness, injury or whatever has kept you down against your will. Indulge me...because I've already lived like I was dying, and I never missed NOT having the chance to ride Fumanchu.

She said I was in my early thirties,
with a lot of life before me,
when a moment came that stopped me on a dime.
I spent too many precious days,
in a cloudy and confused haze
while talkin about the options
and talkin about sweet time
I asked her when it sank in and
this might be the really real end
I said how's it hit ya
when you get that kinda news?
Man, what'd ya do?
and she said,

I missed mommy things,
To listen to my daughters sing,
I longed to make my child's school lunch,
To simply hug both kids a bunch,
And I pulled my kids closer,
Longed to be the mommy-boaster,
And to do normal things just like I used to do,
And she said some day I hope you get the chance,
to live life that's anew.

TO LIVE LIFE THAT'S ANEW!!

#85 - Doctors, Nurses, Waiting Rooms and Heros

I am so thankful for the good doctors in my life. Of course, I've had mostly extraordinary nurses in my history with Addison's disease. The waiting rooms are not so much fun, but I've learned to make the most of them by bringing my journal and a good book...just so I can alternate between the two.

Today, my youngest daughter and I went to the cardiologist together. I love my cardiologist. Well, I love him in the manner that is fitting of loving someone with great respect and admiration after they've saved your life, literally.

Dr. Nadir Ali saved my life in 2001. After visiting too many clinics, doctors, hospitals and on and on and on, for many long months, I ended up in the hospital and in the direct care of Dr. Ali. After I coded, he used his brain to put my symptoms together and that determined cerebral power led him to rapidly order very unique tests to determine my rare medical condition.

Within hours, I was being given life-saving medicine and the end of my life was gratefully extended for much, much longer. In fact, I am approaching my ten year anniversary since my diagnosis. Within two months, it will have been ten years since Dr. Ali went beyond textbook knowledge to explore his impressive brain for a answer befitting a true physician, an authentic healer and remarkable man.

Anyway, today, my daughter and I drove the entire way to the cardiologist's office, but we were told at the receptionist's window that our appointments had been cancelled, as of last week, after the Dr. decided he better hurry and take a trip with his kids before school resumed. Wow, he is a life-saving physician and he actually takes time out of his extremely hectic life to take a vacation.

As a doctor of his caliber, it must not be easy to fit in personal time. I'm sure he looks at all the patients who are in such bad shape and he must feel, at times, that he simply can't keep up. Then, I hope he remembers the time when he saved the life of a 33 year old woman who had two young daughters and a devastated husband watching their mom and wife disintegrate before their eyes...without any answers...until Dr. Ali came on the scene.

I wonder if his children know that their daddy can't save everyone, but he is a hero to many people. A fireman running into a burning building to pull out the child hiding in the closet is a hero. The police officer who goes into trained, ingrained action after seeing the criminal attack a victim is also a hero. The soldier on the battlefield who gave his life for the concept of freedom is a hero. And, the doctor who walks into a place that is not only for those who are healing, but a place for people he sees daily in their suffering and dying moments while he tries to make a difference...is a hero. Do his kids know that they are vacationing with a hero?

Probably not. To them, Dr. Ali is not a hero-extraordinaire...he must check his title at the front door of the house and simply be called "Dad."

Because Dr. Ali saved my life, I was able to be with my
mother during her final moments of life in 2006
after she'd lost her battle with breast cancer.
Here is my mom and dad at M.D. Anderson. Shortly after,
she joined God in His house at 56 earthly years of age.

This is the day our oldest received her Aggie Ring.
A day made possible because my disease was discovered.

With my increased strength, I could make it to
watch my daughter perform her Officer duties on the
school's dance team. She danced like a mighty angel.



Then I watched
my youngest graduate from high school.



The years brought greater rewards as I got to watch
my oldest graduate from Texas A&M in record
time with her degree in Biology.

These are the days that make parenting a dream.

Back to my daughter and I standing in the waiting room at Dr. Ali's office...the receptionist informs us that our appointments had been cancelled by a phone call made days earlier; we were flabbergasted. My daughter was ready to melt to the floor; she'd returned early from a trip to Florida to see Dr. Ali. Yes, the man is THAT good. She stood there stewing, thinking of her incredible moments swimming with the dolphins and she was ready to throw a two-year old fit...What? Cancelled? All this trouble for NADA!?

Me and my youngest...obviously not in a waiting room.

The receptionist calmly and professionally consults her computer database, "We are so sorry, but we show here in the notes that you were called and a message was left to inform you of the cancellation and to try to reset the appointment for next week. The number the nurse called to leave a message is ***-***-**** and she dialed that number on July 29th."

Yes, that number is MY cell phone number. My daughter's wrath turned toward me. She glared at me with her blazing blue eyes shooting darts my direction. I shrugged...OOPS...Did I mention that I am HORRIBLE about answering the phone or checking my messages? I might check my messages once every five weeks. Plus, a few weeks ago, I took a shower with my phone. It was stuck in my bathing suit, between my cleavage and I stepped in the shower absentmindedly to drench the phone along with my bathing suit and body...doesn't this happen to EVERYONE every once in a while? Cleavage can be a dangerous thing.

About the phone avoidance thing --- this happened to me after I became very ill with Addison's disease. I quickly learned to avoid the phone because I simply didn't have the energy it took to talk. And, I didn't want to talk about it. I'd already seen too many shocked expressions after they'd visited, I didn't want to prolong the emotional agony by hearing the pain in their voice. Also, callers could hear the marked weakness in my voice and I got tired of constantly being reminded that I sounded and looked as horrible as I felt. There was no more "fake it till you make it" left in me. So, I withdrew, in a big way.

With my disease, my family entered a world full of doctors, nurses and hospitals. Daily, the mail was full of insurance papers and billing records for every diagnostic test, hospital stay, clinic visit and doctor consultation. My arms constantly looked black and blue, even though I do not bruise easily. I even had hospital stays that required IV lines in my neck and chest and blood to be withdrawn from the back of my knees because my excessively low blood pressure would not allow regular veins to stay open.

The life I'd known, which had been relatively free of seeing a doctor except for a yearly Well Woman exam was gone, gone, gone.

But, during my recovery, I became more discriminating toward the level of care I received from a doctor and medical establishment. I can tell you that all doctors who followed Dr. Ali had a HARD ACT TO FOLLOW. If they were lacking, then I professionally stated my case, perhaps taking my business elsewhere. And, Addison's disease DOES result in business for the medical field. A patient with Addison's disease is likely to require moderate to heavy medical treatment, for life. We become a money-making machine for the medical industry, so I decided to start stepping up and calling out the shady treatment episodes.

My oldest, shadowing Dr. Ghosh during brain surgery.
Another remarkable, beautiful doctor in the Houston area.

Then again, the entire ordeal and massive experience I've gained with doctors, nurses and waiting rooms has forced me to recognize the above and beyond excellent care of so many who have helped me continue to survive. I've had many incredible medical professionals who have shown their deep capacity for tenderness toward humanity by their delicate, forceful, straight-forward, kid-gloved, harsh and soft caring treatment, as necessary. For those who knew how to find a balance...I am thankful for your chosen profession.

And, I continue to be connected with doctors, nurses and waiting rooms. In fact, my daughter and I have tag-team appointments re-set to see Dr. Ali next week. He is well worth the wait. I will be especially grateful to sit for as long as it takes in this particular waiting room.

In fact, I'll be dropping off a few good books to donate to his lobby.

I'll wait and I'll read. Leisurely, I'll read and watch the time tick slowly by until my name is called. I can spare some time for Dr. Ali, after all, he is the one who made sure that I had more time to spare.

Amazing times have multiplied since my
diagnosis, and I thank Dr. Ali for helping me
to continue this beautiful life.